We’ve all heard or seen heartbreaking stories of children with cancer. Ours began in October 2012. Our world turned upside down when our 13-year-old son was diagnosed with fibrolamellar hepatocellular carcinoma (FHC).
What is FHC?
Not many people have heard of FHC or what it involves. Here are some key facts about this cancer:
- A rare form of liver cancer, considered to be a sub-type of hepatocellular carcinoma without the chronic liver disease
- Primarily affects teens and young adults
- Diagnosed in approximately 200 people a year worldwide
- Often diagnosed at a late stage because of its vague symptoms
- Liver resection surgery is the only effective treatment option
- But even with surgery, FHC has a high rate of recurrence and metastasis (spreading)
- Sometimes patients who are able to have a multi-pronged approach with surgery, chemotherapy, and radiation therapy see positive outcomes from their treatment.
For FHC, almost all questions remain unanswered. What causes fibrolamellar? Who is at risk and how can it be prevented? How does a tumor develop? How can it be diagnosed earlier? How can you keep it from spreading/growing? How can you treat and cure it? And each of those questions invites dozens more questions.
As with all rare cancers, there is not enough funding, not enough research, not enough clinical trials, not enough awareness, and not enough attention to the cause.
As a fibrolamellar community, we help raise awareness, we raise funds, we advocate, and we support each other. In addition to the individual doctors, nurses, technicians, and scientists who are working hard on our behalf (see recent news and publication), the FHC community is lucky to have several organizations with caring and committed people who are passionate about what they do and who are working around the clock to make a difference.
- The Fibrolamellar Cancer Foundation (FCF)
- The Tucker Davis Fibrolamellar Research Facility at The Rockefeller University
- The Fibrolamellar Registry
- “Fibrolamellars of the World Unite!” (a social media resource for families facing FHC)
Our son is 15 now and has been fighting for the last 16 months. We are in awe of his courage and strength through this ordeal. He is our hero and we love him.
Funding for cancer research was dealt a major blow when the so-called sequestration (across-the-board budget cuts) went into effect in 2013. At the US National Institutes of Health (NIH), the world’s leading supporter of medical research, continued budget cuts and sequestration have led to a 23 percent reduction in the capacity to fund much-needed medical research.
Liver Cancer Connect, along with the Deadliest Cancers Coalition and the newly formed Congressional Caucus on Deadliest Cancers, urges individuals and organizations to talk to their legislators. Ask Congress to make funding for cancer research and biomedical science a national priority!